Losing Time

Time
I need it.
Will I have enough?

Troubling, tormenting, terrifying thoughts,
miserable me,
thinking as I do.

Fear grabs me and refuses to let go --
haunting me,
scaring me.

I fear having
no more
time.

No impact on humanity.
No clever book written.
No painted picture from my own fingers.
Moving . . . no one.

Will I have enough time?
To move someone, anyone?
So my life is not forgotten.

Writing –
a quiet, possibly futile attempt
to leave something of myself to the world.
It is all I have to offer.

Thoughts in my head
trapped by fear.
Fear that the words won’t match the emotions I feel.
Fear no one will be moved.
No one will care.

Good.
Bad.
It must be done.

If I wait too long,
there will be no
time.

My mother lost her time.
Too sick to do, too sick to plan  
gone – within a month.

All her memories,
all her words –
hidden forever
within her.

Twenty-two years ago
my mother died.

We abandoned her.
Leaving her there
in the hospital
alone,
never to wake up.

After surgery,
a blood clot in an artery
began robbing her vital organs of life-giving oxygen.
The doctor said, “I can make her conscious,
so you can say goodbye”.

Would she want us to? Would I want that if it were me?
“No”, we said.

I regret leaving her
in her artificial slumber –
in a quiet, cold room
to die
alone.

My grieving father
wanting to go home to be near his alcohol and cigarettes
needed me
I thought.

My mother --
motionless,
no longer throwing back her head laughing,
no longer providing comfort when I needed it
lie dying.

I did not want that to be my last memory of her.
Keeping instead the one I had of her smiling at me
in the hall
by the elevator.

My father, sisters and I
-- without his wife, without our mom --
went home.

Rain pouring from an unforgiving sky
reflecting our emotions
making travel slow.

Few words passed between us
as we made our way to a house
soon filled with sorrow.

Four-thirty in the morning,
the hospital called.
Her body finally breathed no more.

Heavy rain on any given day
refreshes that memory.

Taking me back
to that day so long ago
but somehow not.

I saw her last,
in the hall
on a gurney
before disappearing behind the elevator doors.

She smiled at me and said, “Ah hun”.
“I love you. This will make you feel better”,
was all I could say.

Then away from me,
she was taken away from me
forever.

My life was never the same.
With all the happiness I had experienced so far in life,
Never had I experienced until that day,
life’s most painful and permanent part.
There is an end.

Tears flowing less often,
pain still persisting,
longing still lingering.
Never had I lost someone I so deeply loved.

Too quickly her time
ended.

Time is my worry now.
Will I have enough?

Time.

Set the Peckers Free and Other Nonsense

Warning:  Graphic image below

Ah, autumn, it brings cool breezes, multi-colored leaves, and . . . breast cancer awareness messages.

So, it was no surprise when this appeared on my Facebook news feed recently. I decided I could not let it go without trying to educate at least the poster of this picture about why this promotion is upsetting to me.

The conversation went something like this:


Me: Most everyone is aware of breast cancer. October 13th is also Metastatic Breast Cancer Awareness Day. Metastatic Breast Cancer is incurable - deadly. This advertisement sexualizes a deadly disease and neglects the seriousness of it. Keep your bra on. Donate instead.

Female #1: If this day causes someone to donate a $1.00 then it is ok by me.

Female #2: Well, that day should be interesting.

Me: This advertisement does not make anyone aware that 30% of early breast cancer patients will become stage IV – the deadly stage. I lost my breasts 9 years ago, so I can tell you there is nothing fun or freeing about breast cancer. I am now stage IV. Every time I see this image it angers me because it sends the wrong message.

Poster: Oh, I am sorry. I did not mean to offend you in any way.

Me: In no way did I consider your posting of this message to be mean spirited. I only wanted to make people aware that there is another side to this.

Poster: I'm so glad you did, Lisa, You hit a mark that is so true, and I was missing it entirely. Thank you again, Lisa.  

Then this response appeared:
 
Male: OK...What if they would do one for Men's prostate cancer. Do we get to walk around with our pecker hanging out? Before anyone gets upset, if you don't joke about something or have fun it will kill you. I am epileptic and I am just glad when I have a seizure I don't wet my pants...lmbo Humor is the best medicine for anything.

Clearly, this person is in the dark about stage IV breast cancer with his words “if you don’t joke about something or have fun it will kill you”.  My lack of humor is not what is going to kill me.

After, rereading his comment I wondered,: am I missing the humor of this promotion?  Since I no longer have breasts -- just cold, round, fake, immovable illusions – for me the activity of releasing my breasts from whatever binds them wouldn’t feel or look quite the way I think the promoters were hoping. For those women living with an intact cancerous breast -- for stage IV patients at initial diagnosis the breast is not always removed -- I am confident having their breasts jiggling around for people to see would be the least appealing way for them to actively participate in an awareness campaign. Humor and cancer -- hummmm . . . nope, I still don’t see it.

I decided not to respond to the comment-er. His lack of sympathy and ability to comprehend what I wrote was apparent. Any attempt on my part to explain my opinion most likely would have been useless. The writer clearly does not have a body part that has set the course for his ultimate demise.

So I helped one person understand, but the other is still out there thinking: No Bra Day is just plain fun.


If I had responded it might have gone like this.

Me: I would much rather worry about peeing in my pants than worrying if my next scan will indicate I am close to death. Would you feel the same way about humor being your best medicine if you had, using your word, “pecker” cancer which is called penile cancer by the way, and although rare, does happen? I am betting you would have your penis amputated in hopes that your life would not end sooner than you ever imagined. Your relationship with your penis would be changed forever. I don’t believe you would want your penis dangling free in your most comfortable pair of  shorts while you enjoyed how freeing it felt.

Would pictures like the one below help him understand the seriousness of cancer? I don’t think any man or woman finds penile cancer sexy or fun and certainly not beautiful. That should be the same for breast cancer.

Penile Cancer:  http://freethoughtblogs.com/taslima/2012/06/06/did-you-ever-think-of-sexualizing-penile-cancer-dude/

When he asked, "Do we get to walk around with our pecker hanging out?" I wondered if there was a sexualized campaign using slang words and images of healthy-looking people for cancerous male sexual body parts. So I did a little internet investigating. What I found surprised me.

My penile and prostate cancer awareness campaign searches did not generate the same type of slang word usage as is found with breast cancer. Then again dick and cock are words used for undesirable guys, so the effect would not be the same. There were words about awareness and the typical ribbons with their designated colors -- nothing sexual at all.

However, testicular cancer did.

The first website I discovered was "feelmyballs" - The Testicular Cancer Awareness Project. http://www.feelmyballs.org/check_yourself.php

Another one at http://singlejingles.org/  for the Testicular Cancer Foundation had the slogan “Man Up - Check’em”. On that webpage is a round symbol with “Be Ballsy” across the middle. Is that cute and funny?  I bet someone living with testicular cancer doesn’t think so. Those words do nothing but trivialize the disease. It has the same effect as the slang vocabulary used in awareness advertising for breast cancer.

Facebook’s testicular cancer page has this . . .

https://www.facebook.com/tca.org 

And then there was this at www.theboys.org for Testicular Cancer Awareness.

Remember boys, get your bracelets and proudly wear these words “Don’t be a punk, check your junk”.

And finally, I almost FORGOT what I was looking for when I found this on Youtube about testicular cancer.

Cancer advertisements should educate and inform. It should not cause a person to think about sex.

Men are not solely to blame for these advertisements. Women are responsible too. Our society glamorizes woman who prance around willingly allowing their body parts to gain them attention, and for some it can be quite lucrative. Jennifer Lopez, Nicki Minaj, and Beyoncé are at the top in popularity because of their scantily dressed figures – oh yeah, they sing too. When gracing the Red-Carpet, America’s female actresses are spotlighted if they appear in gowns that are clearly meant to promote them as sexual objects. Side-breasts, cleavage, almost the entire breast except the nipple are revealed from every angle. Stars do not have to be half-naked to be appreciated, but as long as people continue to profit from promoting sexual body parts and people find this acceptable, this practice of using sex for disfiguring and life-threatening diseases will never end.

In the meantime, I and many others will continue to express our opinions about the inappropriateness of “Save the Tatas”, “No Bra Day” and "Love my Nuts". Perhaps someday enough voices will be heard and people will change their attitudes about sexualizing advertising in the guise of cancer awareness.

Setting body parts free helps no one.

Update/Treatment #23 and #24

Treatment #24

On August 18th (just over 3 weeks ago), I had my #23 treatment. Since I have been doing well and had such a fantastic recent scan, my doctor decided I could skip seeing her and go directly to infusion.

That is exactly what I did.

Soon after I was seated in the treatment center, a nurse accessed my port drawing from it enough blood to fill a few vials. Those were sent to the lab for analysis. Thirty minutes later, I had the results. My red blood cell and white blood cell counts were normal. My platelets were a little low, but acceptable. TDM-1 can be tough on platelets (those are necessary for the blood to clot). If my platelets were to become very low I would notice that I bruise easily, and my gums would bleed as I brushed my teeth. Let’s hope that never happens.

Treatment #25

On Monday, September 8th, I completed treatment #25. It was a very long affair beginning with a hematology appointment. After my port was accessed, blood drawn and sent for analysis, I walked to the department next door where I waited to see the doctor.

When the knock on the door of the exam room finally came, I wasn’t surprised that it wasn’t my doctor who entered. In the past, I always felt annoyed that a PA would enter when I was expecting my doctor. After all, my appointment was scheduled with the doctor, so shouldn’t I be seeing her? Then I would think "it must be good that I don’t need to see the doctor".  On the other hand, how do I build a relationship with my doctor if she sends someone else to see me? Today though, it didn’t bother me. This PA seems to genuinely care about me -- more so than my doctor seems too. I will gladly see her anytime.

I reported to the PA a new symptom that I have been having over the past three weeks. It began with a pain behind my left ear. It was short-lived and would come and go over a few days. Then the momentary pain would present above my ear.  A few days later, I began to feel a prickly sensation.  It would begin at the back of my head and end at my left temple. This sensation could be felt at different times throughout the day. I really noticed it when I went to bed and upon rising in the morning. Now, this sensation can be felt on the right side of my head as well though not as often and not as noticeable. Weirdly, at times, I feel as if I am wearing a hat when no hat is there.

Of course a cancer patient immediately thinks “oh no, tell me the cancer is NOT in my brain”.  I tried to suppress that thought by thinking about other causes. Maybe my scalp tingling is a result of my back or neck pain. That pain could be sending messages to my scalp in what is called referred pain. My back has been a source of mild on and off pain for years. Or could it be a strange neuropathy involving my head from the TDM-1 (Kadcyla)? I do have neuropathy in my fingers and toes from this drug leaving those nerves hyper-sensitive. As I type right now, little prickly electric-type sensations are present in each finger. Tingling of the head is not listed as a side-effect, though. In the past, I have had this tingling sensation on my scalp when my GI system was wacky. TDM-1 is gentler than Taxotere on the GI tract, but it still causes problems. Perhaps it is my sinuses. I do feel a pressure sensation between my left eye and nose. Have any of you, dear readers, had this type of sensation before?

After I described this new symptom to my P.A., she had no answer as to its possible cause. She told me that brain metastases do happen more often with my breast cancer type. Typically HER 2 positive disease of the brain presents as one mass rather than several. Most often, she continued, you would notice that your speech and balance are affected. Since I was not having those issues, she felt like we should give this more time and see if it resolves. In the meantime, she would let Dr. R. know. If I noticed a worsening then I should call so a brain scan could be ordered.

Brain scan . . . yikes! I had one at the beginning of this tumultuous life that I now lead. It was clean.

Finally to the infusion center I went where I endured more waiting while my drug was warmed and mixed in the pharmacy. At the end of all this waiting, I saw my chemo-nurse walking toward me with the clear bag of fluid that I am so grateful to receive. Thanks Roche/Genentech Pharmaceuticals!

Love Life

One of my favorite things to do is walk the Loop at Wrightsville Beach. There is usually a wonderful breeze that takes away some of the oppression of the summer's heat.
 

Walking alone allows me the opportunity to spend uninterrupted time thinking and sorting through the thoughts that fill my mind. I walk with no music in my ears--just me, lost in thought.

As I walked recently I realized the busyness of the week had made me unaware of the sadness that I keep hidden inside me. With each step I took that sadness seeped back into my thoughts. Soon it was pushing my other thoughts out of the way, and I found myself wanting to run so fast I would leave my diseased body behind. Perhaps some weird unexplainable event would allow me to run right into a new me.

Not too many weeks ago I remember feeling uncomfortable, almost angry at the phrase "love your body".  Today, I thought, "Honestly, why would I even consider loving my body? Especially now. It is literally trying to kill me."

 

As each foot moved me along I entertained the idea of leaving my body for another. I looked around at the people walking the same concrete path that I was. "What about that one?" I thought. "No. Maybe that one . . . ?" I wondered, if given the opportunity to take another body, would I?

As I traveled the 2 1/2 miles of path, I continued to think about the "love yourself, love your body" idea. It seems all of us are constantly reminded to love who you are. Embrace the nuances that make you YOU. I considered why our society finds this so important? So many people seem to have such fragile self-esteems. Perhaps that is how this all began. Or, is it used to promote healthy living hoping people will treat their body with kindness? Maybe it is some kind of good-will gesture to make us feel better when we do not meet some societal standard of beauty? Is it an excuse for those that cannot find the will-power to change something they don't like about themselves? Could "love yourself, love your body" really just be a societal mantra created for consumerism? I stopped when I thought of that one. Is this the reason behind this movement--consumerism?

There is nothing like material-goods to either make us feel like we love ourselves, or it is a validation for ourselves that we do. Advertisers have figured out that they can sell us just about anything from the food we eat to the bikinis some people shouldn't wear, to cosmetics, gym memberships, salon services, even vacations and of course the cars we drive all because of our obsession with our self. This obsession was created or at least nurtured for consumerism.

We are told not only must we love ourselves, but we must love ourselves FIRST before we can love others or before good things can start happening to us. I never understood the logic behind this way of thinking. It seems backwards to me. Loving yourself should be the end result of a very long process. A process that involves surrounding ourselves with people (friends, family, work relationships) who make us feel loved and appreciated. Those relationships are the key to how we feel about ourselves.

I have spent years becoming comfortable in my own skin. Comfortable does not mean I like everything about myself, because I don't. And it doesn't necessarily equate to self-love. Comfortable implies acceptance of self. This only comes after many years of living with . . . well, me. As life happens and people and experiences come and go, acceptance of self becomes part of the process of living.

The "love yourself, love your body" goal promotes material wealth, self-absorption and satisfies our need to get things quickly. Businesses just can't wait for people to become comfortable with themselves. They need you to love yourself today so they can sell their product to you -- today.

Then I thought . . .

Loving yourself is not the same thing as loving living. That is really what is important.

Instead of “love yourself, love your body” our society’s biggest promotion should be about respecting life. The feeding of the “love yourself, love your body” narcissistic agenda causes too many people to become greedy and willing to hurt or take a human life in order to get what they want. Our society’s values are misguided.

I think people would be happier if society moved away from the expectation that we must love ourselves. If we could focus on the importance of life itself instead of how important each of us ought to feel about ourselves, the world would be a better place. With that, I think we all would have a better appreciation for ourselves and other people in general.

I walked the Loop two more times this week. I emerged at the end of all those miles calmer and less sad. I will never be able to keep hidden at all times the sadness I have for what is happening to me no matter how busy I get. It will always be there waiting to find its way back into my thoughts. I will manage to put it back in its place.

The “love yourself, love your body” movement is of no use to me. I have decided, though, my body is like my home-- warm, comfortable, familiar. It took a long time to get to this point. I don't think I would want to go through that arduous process of learning to accept a new one. Besides, I love the life I have had in this body. I cherish my memories, and the people I have met along the way. It wouldn't be my life if I took another body. So, I think I'll keep it.

Then again, would there be a test drive option?

It's Complicated - cancer that is.

Have you ever wondered why a cure for breast cancer once it has metastasized has not been found?

No, it is not the big pharmaceutical companies hiding cures from the public because it would affect their profits.

No, it is not some government conspiracy trying to keep population numbers down.

Actually . . .

It only takes a few minutes to read a scientific article about the signaling pathways inside a cancer cell to understand the reason there is no cure yet is . . . it's complicated—very, VERY complicated.

Take a look at the diagram below showing many of the signaling pathways within a cell.

On the outside of the cell are growth factors. These growth factor receptors sometimes are the beginning of a cancerous pathway. Inside the cell you will see PI3K and Akt. One fourth of breast cancers have a defect in the PI3K pathway. This pathway along with others begins with a gene that makes a protein. This protein activates a molecule. Other molecules are soon activated along a set course that when completed carries out a particular cellular function. PI3K is an enzyme (a special kind of protein) involved in the activation of the protein Akt. The Akt then activates mTOR which causes the cell to grow and proliferate. If mTOR mutates or its activation is controlled by other mechanisms within the cell. Then uncontrolled growth can occur. MTOR is very active in many types of cancers.

In normal cells there are PTENs that repair any mutations or damage to a cell that occurs. If the damage cannot be repaired, the cell experiences apoptosis-- cell death. Sometimes the PTENs are missing which of course is bad because damage to the cell cannot be repaired, nor does the cell die as it should. The cell is then able to make duplicates of itself with the defect and, you guessed it, a monster is on the loose.

I read recently that once a cancerous pathway is established, it travels in a continuous loop. There is no end to the pathway and the cellular function that is created unless something intercepts it. In normal cells, pathways have a halting mechanism to stop those cellular functions when no longer needed. But, in cancer cells, mutations in pathways can cause specific cellular functions to occur non-stop creating a very out of control machine that will replicate itself over and over pushing all the normal cells out of the way in a battle for space.

Amazing and terrifying, isn’t it?  

Below are two wonderful illustrations of pathways within a cell. After finding these pictures on the internet, I decided I had to share them, and the result is this post.

http://www.biooncology.com/therapeutic-targets/mtor              

http://www.biooncology.com/biological-pathways 


If you look at the above picture you will see the HER 2 receptor on the outside of the cell. In my case, these receptors have become more numerous than normal. HER 2 neu over-expression can occur in the cells of other types of cancers as well.

When a ligand (a molecule, a hormone, drug or antibody) attaches to a receptor, it begins the signaling necessary for the pathway to be activated. My treatment involves Herceptin with a chemo drug attached--DM1. Herceptin attaches to a HER 2 receptor taking the place of a natural ligand. Once it attaches, the chemo drug is released directly to the cancer. TDM1 inhibits cell signaling through the PI3K/AKT pathway and promotes apoptosis (cell death). Super cool, right?

Because of cancer’s complexity, no two people have exactly the same cancer. There are differences in the genes that have mutated and differences in the pathways that a cancer uses for survival, growth and proliferation. That is why one type of cancer does not respond the same way a seemingly similar cancer does to a particular drug.

To complicated matters further, within one tumor there can be cells that have different mutations than their neighbor. Read this Medical News Today.

Yup, it’s complicated.

Cancer is also very good at surviving. When a pathway is interrupted by a drug, cancer cells find new branches in their pathways in order to continue their survival. It is believed that the cancer cells can even make their surrounding environment conducive to their survival and spread.

Today, a lot of cancer treatment is a guessing game.  A person is given a drug based on their cancer type and the results of clinical trials. Many drugs are given with little knowledge as to whether it will work or not. Currently, many of the chemotherapy drugs are not targeted to a specific protein. Instead, the drugs target fast dividing cells – healthy and cancerous. Since healthy cells are affected some very nasty side-effects can occur. Very often these drugs only affect a cell in a particular phase in its life. Those phases are growth, copying of the genes in the creation of a new cell (replication), and division. Depending on the phase a cell is in upon the arrival of a drug determines how effective it will be. Some cells may be in a resting phase and are not affected by many drugs. There are some drugs that can affect all phases, thankfully. Many times, several chemotherapy drugs are given together to try to affect more cells going through the different phases at any given moment.  

In the future, as more targeted therapies are developed, treatment should become more personalized. It will be wonderful when scientists can take a person’s cancer cells and determine which proteins in a particular pathway need to be targeted. Then a drug can be selected/developed and delivered to a particular receptor and halt one of the proteins in the pathway. Being able to target only the cancer cell and knowing which pathways to intercept will stop so much of the suffering associated with giving drugs that affect healthy cells too. Targeted therapies – like the one I am being treated with -- will allow people to have a better quality of life, and hopefully live longer.

The complicated cellular machine that makes up all of us is slowly being unraveled. My very brief and simplistic attempt at explaining why cancer is so difficult to cure I hope has left you with the realization that the cure for breast cancer will not happen in the near future. Just Google “Breast Cancer Pathways” and the enormity of what scientists are trying to uncover will be revealed.

I am not a cellular biologist, just a person who finds biology fascinating, so if any of my information is incorrect, please let me know by commenting below.

For more information on types of targeted therapies, see Understanding Targeted Therapies: An Overview at http://www.cancer.gov/cancertopics/understandingcancer/targetedtherapies

Dancing with NED

Take a look at this. Find the word IMPRESSION. Then read the words underneath.

It says "No Evidence of Metastatic Disease"! Can you believe it? I really was afraid I would never see those words. What a wonderful surprise.

The description of a vallecula cyst is not related to cancer, so nothing to worry about there.

This is the best report I have had since becoming stage IV. For now, I am (as described in Cancerland) Dancing with Ned.

The reality is there may still be some nodules hidden from view of this CAT scan. The good news is those nodules that had been previously detected have reduced in size to 2mm or smaller. Next time, they may reveal themselves. It would be so wonderful for those nodules to stay hidden or in fact be gone for good. That is obviously what I am hoping will happen. NED doesn't mean I will live longer than someone who has stable disease, though. Survival is directly related to how a person's cancer responds to treatment. 

Nevertheless, I like the way this sounds. TDM-1 has made me very happy indeed.

Scan Results

This morning I woke up early. I should have gone back to sleep but could not. Today was the day I was to receive a phone call that would deliver good news or bad news. The anxiety I felt was quite intense. I didn't realize how intense until I actually heard the radiologist's report of the scan I had on Thursday morning.

I spent quite a bit of my time recently trying to prepare myself for the good or the bad that I was going to hear whether I wanted to or not. The good would mean another 3 months of feeling so much like my old self. I tried to convince myself that it was going to be good news. Why wouldn't it be. I have been feeling so good. Even the breathing issues I had been experiencing which I thought were allergy related now seem to have been resolved. Perhaps it wasn't allergies after all. The bad news of course would mean I would be inching closer to the end. That possibility terrified me. Nevertheless I mentally calmed myself with the hope that the next treatment may work, and that all is not over yet.

I also tried to convince myself that the worst news had already been delivered to me in April of 2013. Today, though, I decided that is not exactly true. In April I still had a chance to prolong my life. When the available drugs have all been tried, your chance is over. With every drug failure, it means I am closer to the end of the list -- simply terrifying.

Just after 11:00 am my phone rang. I answered and took a deep breath. The words I heard sent my heart racing and my body shaking. The nurse said, "The news is GREAT!" That is all I needed to hear. On Monday I will get the rest of the report. Today I am so incredibly happy. I get to spend another 3 months loving my life. Wahoo!